Organizations Filed Purposes:
TO FIND EFFECTIVE TREATMENTS AND A CURE FOR FANCONI ANEMIA AND TO PROVIDE EDUCATION AND SUPPORT SERVICES TO AFFECTED FAMILIES WORLDWIDE.
RESEARCH - SINCE FARF WAS FOUNDED IN 1989, WE HAVE SUPPORTED MORE THAN $24 MILLION IN RESEARCH, SUPPORTING MORE THAN 230 RESEARCH GRANTS AT MORE THAN 74 CENTERS WORLDWIDE. EVERY YEAR WE HOST A SCIENTIFIC SYMPOSIUM, GATHERING OVER 200 FANCONI ANEMIA (FA) SCIENTISTS, RESEARCHERS, AND DOCTORS FROM AROUND THE WORLD TO PRESENT RESULTS FROM THEIR RESEARCH AND TO COLLABORATE WITH OTHERS IN THE FIELD. IN ADDITION, WE HOLD SMALL WORKSHOPS ON AREAS OF SPECIFIC INTEREST, SUCH AS HEAD AND NECK SQUAMOUS CELL CARCINOMA, IDENTIFICATION OF NEW DRUSG TO TREAT PATIENTS, AND GENE THERAPY. IN 2019, WE LAUNCHED A CLINICAL REGISTRY TO SUPPORT REASEARCH AND EXPEDITE NEW TREATMENTS.
FAMILY SUPPORT AND EDUCATION SERVICES - CURRENTLY, THERE ARE NEARLY 1,000 FAMILIES WORLDWIDE THAT ARE REGISTERED WITH OUR ORGANIZATION AND AN UNDETERMINED NUMBER OF NEWLY DIAGNOSED PATIENTS. WHEN FACED WITH THIS FEVESTATING DIAGNOSIS, THEY LOOK TO FARF FOR SUPPORT. WE PRODUCE INFORMATIONAL PUBLICATIONS, INCLUDING OUR HANDBOOK "GUIDELINES FOR DIAGNOSIS AND MANAGEMENT", A FAMILY DIRECTORY, AND A RESOURCE GUIDE LISING ALL TREATMENT CENTERS AND DOCTORS WHO WORK FOR FA. WE ALSO ORGANIZE A WEEK-LONG CAMP FOR FAMILIES AFFECTED BY FA, WHERE WE BRING SCIENTISTS AND CLINICIANS TO PRESENT THE LASTEST RESEARCH AND TREATMENT DISCOVERIES. WE INCLUDE SUPPORT GROUPS FOR PARENTS AND PATIENTS, RECREATIONAL ACTIVITIES FOR CHILDREN, AND GIVE FAMILY MEMBERS AN OPPORTUNITY TO PARTICIPATE IN VARIOUS RESEARCH PROJECTS. IN ADDITION, WE HOLD AN ANNUAL FA ADULT MEETING IN AN EFFORT TO MEET THE SPECIAL NEEDS OF OUR GROWING ADULT POPULATION. FOR BOTH EVENTS, WE OFFER TRAVEL SCHOLARSHIPS FOR ATTENDEES.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Mark Quinlan | EXECUTIVE DIRECTOR | 40 | $114,333 |
| Sudhir Borgonha | TRANSLATIONAL SCIENCE DIRECTOR | 40 | $112,915 |
| Isis Sroka | DIRECTOR OF SCIENTIFIC OPERATIONS | 40 | $105,889 |
| Lisa Mingo | BOARD MEMBER | 1 | $0 |
| John Connelly | BOARD MEMBER | 1 | $0 |
| Aileen Carlos | BOARD MEMBER | 1 | $0 |
| Stella Davies | BOARD MEMBER | 1 | $0 |
| Rachel Altmann | BOARD MEMBER | 1 | $0 |
| Bill Mccorey | BOARD MEMBER | 1 | $0 |
| Nancy Golden | BOARD MEMBER | 1 | $0 |
| Lynn Frohnmayer | FOUNDER | 5 | $0 |
| Orion Marx | TREASURER | 5 | $0 |
| Sharon Schuman | SECRETARY | 5 | $0 |
| Andre' Hessels | VICE PRESIDENT | 5 | $0 |
| Mark Pearl | PRESIDENT | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202012659349300016_public.xml